New Horizons Newsletter Spring 1998

New Horizons is a nonprofit newsletter published three times a year by and for ventilator users, their families and those that care for them. Articles and comments are welcome. New Horizons is not and has never been associated with any other newsletter, product, or company.


FROM THE PRESIDENT'S DESK
Technology News
By Paula M. Howaniec

Last year the food and Drug Administration (FDA) approved a surgically implanted electronic hand controller that is touted as the first device in the world to help people with mild quadriplegia regain the ability to grip and hold objects.

Called the Freehand System, the device took 25 years of testing at Case Western Reserve University in Cleveland before its manufacturer, NeuroControl corp. could begin shipping it to rehabilitation centers. In final tests, all of the 61 quadriplegics who tried it out found that it significantly improved their abilities to perform everyday tasks.

The Freehand System is designed for people with spinal cord injuries low enough that they still have some arm movement and, in particular, can move their shoulders. The device enables them to open and close their hands so they can grip objects as small as a fork or pen. The system takes about 3 months to learn to use.

A surgeon has to implant a two inch processor into a person's chest, thread electrodes under the skin down to the hand, and attach electrodes to hand muscles. The hand is then encased in a cast for a month. The device works with a surgically implanted stimulator in the chest, in the same place used to implant pacemakers.

After surgery, the device works by wearing a transmitting coil over the implanted stimulator. This connects to an external controller worn on one shoulder. When activated by a jerk of the shoulder, this sensor sends a signal through the implant to the opposite hand. The faster the shoulder jerks, the quicker the hand movement. The device allows the hand to form up to two basic grasps: a handshape cupped like the letter "C", useful for picking up cups or large objects; and a movement pressing the thumb against the first finger, useful for controlling a pen or toothbrush.

NueroControl is already testing a second-generation device for people with more extensive forms of paralysis, as well as leg movement and bladder function.

For more information about the Freehand System, contact NeuroControl Corporation, 1945 East 97th St...., Cleveland, Ohio, 44106-4720.

Assist Cough in SCI
Submitted to New Horizons by Steven H. Linder, MD

Improved Cough Using A Trained Service Dog For A Tetraplegic
Although numerous high-tech devices are available to assist the physically disabled, many daily needs are still unmet. People with tetraplegia are unable to cough effectively. The inability to cough and clear mucus out of the lungs puts these paralyzed individuals at high risk for pneumonia. Merrill Burgardt, a man who has been paralyzed from the neck down for over five years and a vent user, has found a way to cough better and prevent serious respiratory problems. Heidi, his CCI Golden Retriever has been trained to press against his abdomen to help the man cough when he has increased chest congestion.

His physician at the Spinal Cord Injury Unit at the VA Palo Alto Health Care System in Palo Alto, California, measured the force of the man's cough. The dog's actions were found to markedly improve the ability of the man to cough. Prior pulmonary research has shown that electrical stimulation can enhance the ability to cough in tetraplegia. The use of a trained Canine Companion could give other paralyzed individuals improved lung function while reducing costs of attendant care. Janis Thom, a registered nurse at the Spinal Cord Injury Unit, has shown that Canine Companions can be trained to assist the physically disabled in many activities of daily living. Independence from caregivers is a hallmark of effective rehabilitation in nearly every case. The long term goal of this research is to make individuals independent of a caregiver with respect to cough.
Linder SH, et al. Improved Cough Using a Trained Service Dog for a Tetraplegic.

Humidity and Ventilators
(Part II)

Warming the air by artificial means
To avoid complications and optimize the function of the mucociliary transport system, air introduced into the lungs must be adequately heated and humidified. Three main types of humidification systems are used for this purpose:

Heated humidification with a non-heated wire circuit. This is the most common system used in the United States. With most of these models, air passes over the surface of a heated water reservoir attached to the ventilator. Since warm air carries more moisture than cooler air, the air is both heated and humidified. The ventilator then ideally delivers the air to the patient at close to body temperature and with 100% humidity.

There's one major problem with this type of system. As the air travels to the patient's airway after exiting the reservoir, it passes through the tubing , which is at room temperature. Since this is cooler than the humidifier, the air in the tubing cools. Because cool air holds less moisture, condensation occurs in the tubing, causing what's referred to as rainout. This requires additional work by you or the respiratory therapist to periodically drain the rainout from the tubing, and take care not to position the tubing in such a way that fluid can flow down toward the airway and into the patient.

Heated humidification with a heated wire circuit. The recent addition of a heated wire circuit to the traditional system significantly reduces the problem of rainout. The wire runs the entire length of the ventilator tubing. When heated, it prevents air that is moving from the reservoir through the tubing from cooling and the moisture from condensing. When set up properly, you should be able to see a condensate mist along the walls of the tubing , which assures you that the air is fully saturated.

Heat moisture exchanger (HME) This is the generic name given to a device-also known as an artificial nose-that's placed in the ventilator tubing. It's a small plastic container; the components inside-foam or paper impregnated with salts or metal coils, for example-trap some of the moisture and heat from exhaled air, then release some of it as the vent user breathes in. Advantages to short-term use of this device include ease of use and lower initial cost than the heated humidification systems. The disadvantages are daily changing and lack of providing 100% humidity at body temperature.

Take the advice of your respiratory therapist and use the system that is suited for you.

FDR, paralyzed by polio, role model for disabled
By Valerie Brew-Parrish

Life is filled with ironies. The man who bellowed that, "The only thing we have to fear is fear itself," was terrified of letting the people know that his legs were paralyzed in 1921 from his bout with polio.

Franklin Delano Roosevelt, our illustrious 32nd president, went to great lengths to conceal his disability. He and his wife, Eleanor, did not want the public to know that the president of the United States used a wheelchair. His elaborate schemes to hide his disability are well chronicled in the book "FDR's Splendid Deception," by historian and fellow polio survivor Hugh Gallagher.

The charade is finally coming to an end thanks to the efforts of the disability community. In May, the FDR Memorial in Washington , D.C. was unveiled. The Roosevelt family still vigorously voiced their objections to showing Roosevelt in his wheelchair. They felt that it was undignified to portray their famous ancestor using a wheelchair for mobility.

Former President George Bush, who signed the Americans With Disabilities Act legislation, united with disabled leaders in demanding that FDR be shown as he really was, a person who had a disability. Sen. Daniel Ken Inouye, D-Hawaii, introduced a bill in the senate at the behest of President Clinton to have the memorial depict FDR with his disability.

There are 49.9 million Americans with disabilities. FDR served this country valiantly for four consecutive terms from his wheelchair. He did not let his disability stop him from being the most powerful human being in the world. It is unfortunate that FDR let Eleanor convince him that he had to hide the fact that he had paralyzed legs. He enjoyed wrestling on the ground with his children. FDR even invented a makeshift hand-control system allowing him to drive.

This man did not wallow in self-pity. Bertie Hamlin, a family friend of the Roosevelt's, recalled in her memoirs that one evening she and her husband had dinner with the president. The secret service carried FDR in the room and he told them not to return until 9:30. The Hamlins assumed FDR would remain at the dining room table.

When dinner was over, Franklin pushed back his chair, dropped to the floor and crawled with his hands to the next room and heaved himself onto another chair. He was quite pleased with himself for accomplishing this feat. It was too much for Hamlin, who had to remove himself the room because he was so overcome with grief.

Does it really matter how we accomplish what we do as long as the deed gets done? I believe if Franklin Delano Roosevelt were alive today, he would apologize for hiding his disability. He would not allow society to dictate the message that disability equates hopelessness and being useless. He would be shouting for more ramps and job opportunities for those with disabilities.

By golly, FDR is our role model. So big deal, he used a wheelchair and crawled with his hands. FDR was a great president and he would want his memorial to depict him honestly-using a wheelchair.

Valerie Brew-Parrish is a disabilities consultant and polio survivor residing in Greenwood, Indiana. Article reprinted courtesy of Valerie Brew-Parrish.

Catheters
By Lee Swenson

Here the major reference is to an indwelling urethal catheter. Though doctors and nurses will warn of the chances of infection, it's my belief that simple care techniques can minimize the chances of severe infections. Leakage is a problem with any catheter, but this, too, can be kept to a bare minimum by thoughtful care techniques. Urine generally doesn't flow up hill, so this thought alone can prevent problems with back pressure, generally the chief cause of leakage.

When a leg bag is used, the flow pattern must be down the leg. I've seen leg bags that are worn wholly on the thigh. To me this is contrary to even common sense laws of gravity. Most people using catheters do not spend much time in a standing position, therefore a thigh bag cannot be down hill from that person's bladder. No down hill, no significant flow.. When the urine doesn't readily flow from the bladder, the result is discomfort, leakage, and infection. This type of bag is also extremely difficult to drain. The leg bag I use, is an all latex one, whose drain port at the bottom, is low on my calf. Unfortunately, this good a bag, being very reusable, is also expensive. It also has an anti back flow valve at the top. This valve is essential when a person is transferred from chair to bed, vise versa, when reclining in a chair, or simply to prevent a mess when changing to a bedside drainage bag.

The indwelling urethra catheter described above, is often called a Foley. The condom catheter (secured to the penis by double sided sticky tape) is often called a Texas. Another type of indwelling catheter is a supra pubic catheter. This is the first inserted with some surgery, through the abdominal wall into the upper bladder. I'm told that once the incision forms a stoma, this type is less liable to infection than a Foley, and is changed less frequently.

The condom catheter, when applied carefully, can be used by a person who has enough strength to consciously force the urine past the sphincter and prostate. I wore this type when I was home alone in Sacramento, as I was unable to either use a urinal alone or ambulate to the toilet. If the user always remains in bed, with no daily changes between a leg bag and a bedside drainage bag , then one only need be concerned about the urine flow into that bag and emptying it. If the user switches between bedside bag and leg bag, then it's necessary to clean both bags after use. Some leg bags will have a solution suggested and sold by the manufacturer. A less expensive suggestion is a solution made from 3 parts water and 1 part vinegar. Use an alcohol wipe to clean the end of the bag tubing before it's inserted into the catheters tubing's end.

Lee Swenson has ALS and is a full time vent user.

Potpourri

TECHNOLOGY MAKES COMPUTER USE EASIER

Microsoft has released Active Accessibility, a Windows-based technology that will make it easier for people with disabilities to use personal computers.

Active Accessibility, the set of program files, will upgrade and enhance existing Windows systems. From the user's perspective, changes will hardly be noticeable. However, once the files are installed, items added to the system to enhance accessibility will run more smoothly. Items such as synthesized speech programs that adapt the mouse or keyboard, switches and sip-and-puff devices will be much more user friendly.

Active Accessibility also makes it easier for other software developers to create products that are compatible with existing software.

A Beta test version is available at www.Microsoft.com/enable.

NEW ALS BOOK OUT

Amyotrophic Lateral Sclerosis, by Drs. Hiroshi Mitsumoto, David Chad and Erik Pioro,, 1998. 480 pages, $140. F.F. Davis Company , 404-402 N. Second St., Philadelphia, PA 19123; (215) 440-3001.

A comprehensive book on ALS that covers everything from the basic anatomy and physiology necessary to understanding the disorder, to the latest experimental treatments, to last year's news.

The book includes excellent chapters on daily living, communication, nutrition and mobility. Also "hard science" chapters.

Although directed at doctors and health professionals, it can be understood by the educated reader with the help of other basic reference books.

ADVOCACY

Accessibility in Nevada/Ronald Ray Smith: 800/484-2703; e-mail: enforcer@ibm.net Web site http://ourworld.compuserve.com/homepages/enforcer


ADAPT/Austin: 1319 Lamar Square, suite 101, Austin, TX 78704; 512/442-0252;e-mail: adapt@adapt-now.com


A World of Options: Mobility International USA, P.O. Box 10767, Eugene, OR 97440. E-mail: info@miusa.org

SUBSCRIBE NOW

We hope that you enjoyed reading this issue of New Horizons. If you wish to receive future issues, please let us know. Our Internet address at: PaulaMH@aol.com

NEW HORIZONS STAFF

Paula M. Howaniec President\Founder
Paula M. Howaniec Writer\editor
Lee Swenson Articles
Jim Lubin Web Editor
Kathleen Bernard, LPN Printing

Copyright 1998 Paula M. Howaniec


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